Alicia479

I went to the Mayo in AZ last spring. I was actually really impressed with them. I did not present with "typical" syptoms. I went there b/c my docs here thought I had a neuromuscular disease but they could not figure out what (severe tremors). The docs at the Mayo figured it out fast. I did have autonomic tests with the sweating, etc that they send to Rochester to have read and the the docs at Rochester and Scottsdale talked. I saw Dr. Scott in the Cardiology clinic. I am not sure how they would be for treatment as while they were more than willing to talk with my docs at home, they were not in contact with Dr. Grubb. But overall I was impressed with the diagnosis aspects of it partically because I saw over 15 docs at home that all had absolutely no clue. With all this said though, I have never been to the Rochester one and had I my opinion about Scottsdale may be different.

Cathy, Thanks for your reply. The scooter guy came by yesterday and I tested out the wheelchair and the scooter. I have decided on the scooter. Thanks for you help! Alicia

A foldable power wheelchair is an interesting idea. I have private insurance so it will be a little easier to get it approved. But is is such a hard decision isn't it? The dealer is coming to my house with a power wheelchair and a scooter for me to try out today. I like the idea of the scooter since (and this kinda a vain reason...) people who see me know I can walk. It would also be easier to transport b/c I can get a lift. The power wheelchairs are heavier so its harder but the dealer says it may be better because I would not have to worry about balance issues on bad days.....It is a tough decision..... Does anyone with a scooter have issues with keeping their arms out infront of them? Anyone have any regrets with their decison or advise? Thanks, Alicia Alicia, 19 Seattle WA POTS (autoimmune), Crohn's Disease, Hypothyriodism (Hashimoto's), JHS Midodrine, mestinon, synthroid, salt, LIQUIDS, compression stockings

Hi, I hope everyone is doing okay. I was wondering for those of you who have an power wheelchair or a scooter how you like it. I am trying to decide which one would work best for me and I know everyone is different but I am just curious as to your opinions and stories. I need something so I can go to back to school this fall but I just cannot decide which would be better. I think the scooter would be easier to transport but I am just not sure.... So any thoughts on the subject would be appreciated! Thanks and I hope you all had a great weekend!

I am from Washington and it seems like in comparision there are fewer people in the Pacific Northwest. But I do not think that means there are less people afflicted with dyautonomia, I think there are less people diagnosed with it here. There are no docs around here that know about it. I had to go the Mayo to get diagnosed. I have been fighting with my insurance to pay for it becuase they thought I could have gotten diagnosed here. I just found out last week that they will finally reprocess the bills becuase after calling around (including the University of Washington that is supposed to be the #9 hospital in the nation...) no one they talked to knew what it was or how to diagnose. Even the doc I see now didn't know in the beginning but he has been working with Dr. Grubb to help me. So I think its a lack of knowledge that makes it seem like there are less people on the west that are afflicted with this. I hope this makes sense, I am kinda out of it today...

Thanks for all the great replys. I am planning on asking my doc about it tomorrow. I am sure it is no big deal. Maybe I should ahve put earlier what it drops to. It drops to 78/35 as soon as I lie down and then goes back up when I sit up. It will stay low as long as I stay laying down. That seems like a signiciant drop to me as my "normal" is 110/68 ish but who knows. Like I said before though, I am sure its fine. Thanks for all the imput, I really appreciate it! Thanks again, Alicia

Gena, thank you for your reply. Yes I knew that POTS does not have to have a drop in blood pressure. I just was not sure though about it dropping lying down. Thank you so much for your reply! Aren't those headaches horrible?... Thanks again! Alicia

I have a quick (hopefully) question regarding bp. I have POTS and I am seeing my EP on Tues. but I thought I would post it on here to see if anyone else has the same problem. While my pusle will jump 60-80 bpm when I stand up my bp will usually not drop my more than 10-15. However, my blood pressure drops significantlyevery time I lie down. My pusle does not change when this happens. I am also getting really bad headaches when this happens and I wake up with them every morning. After I sit up it goes away and my bp returns to normal or near normal. Could it be a side effect of medicine? I am on Midodrine, Mestinon, and salt tablets. It sees so odd to me. I was worried taking midodrine that my bp would go up lying down not down! I am hoping my doc will be able to give me some advice about this but for now I thought I would post on here and see if anyone else experiences this. Thanks! ~Alicia

My resting has been 120-130 for as long as I could remember. It will then jump to 160-180 when I stand. Luckly, the mestinon has brought it down a little and decreased how high of a jump my hr will make. Heart rate is such a funny thing since it varies so much from individual to individual. I recently had a friend who refused to believe me that mine was what it was. To him a heart rate of 180 was impossible while to me it was no that big of a deal.... You should have seen the look on his face when I had him take my pulse......

I take both. However, I am only on 30mg of Mestinon 3x a day. I had been on 60mg but that dose was just too much for my body. I experienced a lot of shaking and trouble speaking. Once I reduced the dose of mestinon those symptoms went away. I hope you find the right dosage for you and it helps you with everything! ~Alicia

When I first starting have symptoms, my PCP send me to a neurologist who thought I had MS. For months I underwent test after test, all along the way the doc insisted we would figure it out. I kept deteriorating so a different doc recommended I go to the mayo clinic. It was not until I have requested my records so I could send them to the mayo that I saw that the neurologist who had repeatedly told me that he thought it was MS wrote in my records that he though it was a coversion disorder. I have never been so mad. The funny thing was, I wasnt mad that he thought it was a conversion disorder, I was mad that he did not send me to a psychiatrist. So I went to one myself for evalution. I was so desperate for a diagnosis that I was actually hoping that was what it was. The psych laughed at me and said it was not psychological and that the doc probably just wrote that in the records to save himself. I was so disappointed. It seemed (and still does) that that would be so much easier to treat. So yes I have had it written in my records but no, unfortutaly, that is one thing I do not have.

Melissa~ I am so sorry. I was actually about to write you and ask you if you had recieved the wheelchair yet. I am currently going through the same thing, except with an electric wheelchair. My rheumatologist doc sent me to this "expert" PT who said I was destroying my shoulder by trying to push myself around my college campus (its very hilly and I have EDS so I would dislocate my shoulder at least once a day). She said I needed an electric one so I could carry on with my life and the doc agreed but then when the insurance send him the papers all of a sudden he decided no. His reasoning was that he had bad experience with people getting lazy and that if I "thought" I was unable to push myself my mom could just do it. LIke my mom can just quit work to push her 19 year old daughter around school. I had to take spring quarter off becuase I had no way of getting arouond. My new cardiologist has talked to Dr. Grubb about it and Dr. Grubb told him if that is what I need to live my life than that is what I should get. SO now I am starting the whole process over again with the cardiologist. Sorry for the rambling, I just thought I should let you know that I know where your coming from and how frustrating it can be. I do not know how I would be able to remain sane if I was moving out of state in the middle of it. I hope it all gets easier for you! Just as a thought, dont you think it would be great if each doctor was required to try and get around in the regular 40-50 pound wheelchairs for an entire day with no help, lets see... up hills, and having been given something to make them fell as we do. Just a dream but I think a lot more docs would understand then!

This is a great topic. Everyone is so creative! Hmm... but unfortuately mine could not get more simple. First name plus some random numbers. And to think it took me like 5 minutes to come up with it!

I am sorry you have had such problems. I have had two tilt tables, both in one week, both at the Mayo in AZ. My blood pressure only dropped slightly on one of them. They told me that did not matter. What mattered was that my heart rate went from 100 to 180 in less than a minute. The diagnosed me with POTS. I have since been to another cardiologist in Seattle who has admitted he does not know a lot about POTS but he is friends with Dr. Grubb and consults with him. NO one has ever questioned my diagnosis. That is just my personal experience. You may not have any autonomic problems but the increase in heart rate may make you want to get a second opinion. Unfortuately most people have to travel to get a correct diagnosis. Good luck with all this!

Thanks everyone. I called my cardiologist's office but he was out of town so they asked a different cardiologist who of course had never heard of this being prescribed for POTS so he talked to a neurologist. The neurologist (sorry if this is getting confusing) said that he has had patients with MG have this problem with the time release tablets because they sometime release a lot at once and then slowly release more to keep the levels stable. He thinks it was just too much for my body so I will try the lower dose again once my body is back to normal. It is interesting because I guess they have something that takes it out of your body at the ER if the symptoms get too bad but I am trying to "suffer" through it. But we will see. I think it is getting better, I dont sound as funny when I talk so who knows. Melissa- Thanks that is interesting. I am going to talk to my doc when he gets back and hopefully stay at a lower dose. Linsay- There is a lot of question about whether I have mast cell. My urine levels were high but intestinal biopsies were fine so the doctor at the mayo said he was not going to pursue further at this point. I have anaphalaxis to meds though so it is possible its related.

Thanks. My tongue does not feel thinck but I sound funny when I talk. I think it is b/c my tongue is spasming so much. I am really starting to think this may just be too much of a dose for my body

I started taking Mestinon at 30 mg 3 times a day three weeks ago. It helped so much. Then they moved it up to 60 mg 3 times a day after two weeks. Today they moved me up to the 180 mg time release tablet and my body is going crazy. My legs, abdomonal muslces, and togue are twitching really bad. Has anyone else experienced this? I am going to call my doc but I doubt he knows anything himself. He talked to Dr. Grubb a few weeks ago who recommended this so I dont think he knows anything personally but I will try. Is this something that will go away after awhile after my body gets used to it or is it a sign this is too much for my body?

Okay so I posted on the other mastocytosis thread but maybe I should have read this first. So I am kinda confused. Maybe someone can explain this for me. I have POTS. Dr. Grubb thinks it is caused by some sort of autoimmune reaction. However, I also have high N- methylhistamine levels. The allergist I saw at the Mayo was concerned about mastocytosis but said that since my POTS explained my symptoms and my GI biopsy was normal (no mast cells) that he would not pursue it further at this point. If there is a connection between the two maybe I should pursue it a little further. This is all so interesting.....

When I went to the Mayo Clinic a few months ago the allergist I saw there thought I may have mastocytosis. My N-methylhistamine was high but he said that my GI biopsy was stained for masted cells and came back normal so he was not positive. He left it as a option to pursue later if I would like but said that since they had found the cause of my symptoms (POTS) that it was not necessary to pursue it right now. I think it is really interesting that others here have it.

I just started taking Mestinon two weeks ago. I started out on 30 mg 3 times a day and just moved up to 60 mg three times a day today. I am moving up to the 180 mg time release next week. I have found it to be very helpful. My resting heart rate has gone from 120 to 80 which has been like a miracle. Also, I can read and have it actually make sense! I love to read and have not been able to for months now because while I could read the words on the page I was not comprehending any of it. I now understand everything so much better which is great. The only side effects I have experienced is an increase in sweating. Kinda gross... sorry but I do find myself sweating even when I am not hot. But it is tolerable. I find it to be worth the side effects. Good luck in taking it! I hope it helps you.

My first symptom was my knees buckling. As time went on without a diagnosis it just got worse and my leg muscles started spasming whenever I would try to walk. With treatment it has gotten somewhat better. I agree with everyone else, try compression stockings. I notice a big difference when I am wearing them. My knees do not buckle as severly. Good luck! Oh also, I always keep a cane with me to help me stop myself from falling.

I have no idea if car accidents can cause POTS but I do think it is interesting. I have been told that my POTS is probably secondary to hypermobility syndrome. However, if I look back in my medical record my heart rate and everything was fine up until I was in a rather severe car accident four years ago. I injured the top left side of my neck (where the neck meets the head) by a stereo system that came loose in the accident. I have no idea if the accident played a part in my POTS because like I said the docs told me they thought it was secondary to HMS but I certianly think its interesting......

I have used a regular wheelchair for the past four months. I use it whenever I go out because my legs will spasm too much for me to walk and my heart rate will immediately go up to 180. I can manage to walk short distances but thats it. It is really hard because my doctors will not prescribe me an electric wheelchair because they think it will make me lazy. That makes me so mad because I have been working so hard trying to get better but they just do not get it. Hopefully my new cardiologist will. I want to go back to college in the fall ( I am 19) but it now all depends on whether I can get around campus. It will be nearly impossible without an electric wheelchair because I can not push myself without dislocating my shoulders. Hopefully we will figure something out soon....

I get tingling on my nose, chin, and lips. The docs think it is from the POTS because it got much worse during and after my two tilt table tests. Although, my lips will usually turn blue when it is like that. I hope yours goes away again or at least improves. Good luck if finding out if it is connected!

Thank to you all for your advise. This whole thing has been so confusing and frustrating! Patti- I hope your daughter is doing well after having her wisdom teeth taken out. I am also interested in going into education but have been unsure about how my energy levels would be. I looked up the Dorm Life forum and noticed she is planning on going to a catholic university. I am also attending a Catholic university here in seattle and have been so impressed with their support. I have been very lucky. The dean even calls me at home on Sunday nights to check in with me to see how I am feeling! I hope she has as much support at her college choice.